9.25.2009

Just 24 hours later

What a different experience it's been this time around. Here we are just a bit more than 24 hours after surgery and we're already out of the ICU. We were moved back up here to the 8th floor this afternoon. We are making sure that our nurses keep a very close eye on Rylynn, but she's doing amazing. I can't imagine any adult undergoing what she's been through and being where she is now. We've come to the floor with only a bit of oxygen, one IV and her pacer wires (wires connected directly to her heart in case they needed to shock it).
Last night was not as bad as Gilly and I thought it might be. Post-op these guys suffer from terrible headaches and the nurses prepared us for the worse. She did scream hysterically every 15-30 minutes for a few hours yesterday evening, but by midnight or so she had gotten through the worst of it. She has been resting really comfortably today, but she still hasn't been able to muster a smile yet.
We were told to expect another wave of pain tonight around midnight (called the "twilight hour"), but if we can get her through till morning, we should be on the downhill slide.
Luckily, she's been eating great and looks great.
I know I never posted pictures of her after her first surgery, but I've included one so that you can truly see the difference that we've experience. I really can't believe it's been so smooth. Please pray that she doesn't feel too much pain and her body heals quickly.
Please also include a few extra thoughts for some of our little heart buddies here. We saw one little guy that was born days before Rylynn with the same condition and he is still here in ICU trying to fight through. I hope they can get him feeling better soon so that his family can take him home.

Here's what we saw the first time around.

And here's what she came out like yesterday. Can you believe she looked so incredible after surgery!!! Of course this is after they had taken out her breathing tube, but she looks wonderful!

Here how she looked when we headed to the 8th floor.

I hope to post more great news in the coming days. Thanks for sending all your love and prayers to Miss Rylynn. It's helping us all through this.

With love. . .

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9.24.2009

Quick Peek

Gilly and I just had a "drive by" shot of Rylynn. She looked great! Her cheeks were rosy and had great color to them! We can't wait to get back to her room to see her in an hour or so.
The doctors confirmed that they did not have to shave her head for anything... whew! :)
Please pray for a speedy recovery!
With love. . .
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Out of Surgery

The surgeon just came by to let us know that he has completed his repair and Rylynn is doing well. They have taken her off of by-pass, warmed her body back up and completed the echo. Everything looks just as they had hoped and the pressures and sats are good. We are hoping to get a quick peek at her as they wheel her to the CVICU and then should get to go back to her room in a couple of hours.
We can't wait to see our little girl! We want to be by her side when she wakes.
With love. . .
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In Surgery

Rylynn was taken back this morning around 8:30. We should be receiving updates from the OR every hour or so. It will be late this afternoon before she's out and I will try to let you all know how she does. She gave us a big smile when we sent her off this morning, it was beautiful!
I'll post again late today, hopefully with some good news.
With love. . .
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9.23.2009

Update

So we're not where we thought we'd be right now. After a loonngg day of waiting, we moved to pre-op 3-1/2 hours late (3:30 pm) and then were told that our surgery would be delayed until tomorrow. The first case this morning had a few complications and then ran over by several hours. The terrible part of today was having a baby who had not eaten since 5:00 this morning, she was miserable! The blessing in this, is that Dr. Forbess will be nice and fresh tomorrow morning. We will be first case tomorrow so hopefully Rylynn will eat well this evening, rest well tonight, and by the time she realizes she's hungry she'll be going under.
We had a small scare last night when Ry had a little blood in her stool, but Xrays did not show anything to be concerned with and today her soiled diapers have been normal. This meant she missed a feeding last night and between labs and Xrays, we didn't get much rest. So Gilly, Rylynn and I are all hoping for an uneventful night so we can get a little sleep for tomorrow's big event.
I will do my best to keep you all posted on her progress tomorrow.
With love . . .
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9.22.2009

Ready for Tomorrow

What a busy couple of days. As always, Rylynn wanted to do things her way so yesterday instead of going home after our exam, echo, and Xrays we were admitted. The Cardiologist was worried about her diving oxygen levels and wanted her to be monitered and to be put on oxygen. We had a terrible time with IVs again. They tried for some time on Monday night and were unsuccessful, then this morning they called in the IV team and still no luck! Poor Rylynn was a trooper, Gilly and I however, were very shaken. In the end, they decided to put in her IVs today after she was under anesthesia for the Cath.
The Cath procedure went well. Pictures of Rylynn's heart showed no surprises so the Docs are ready for surgery tomorrow. We have been bumped to the second case of the day so we're expected to take her back around noon. She is finally resting now and has been able to take down a couple of ounces of formula. I hope she rests well tonight. We couldn't be prouder of the way she has handled the last couple of days. She is truly our little rockstar!
It has been nice to see so many familiar faces here. We were surprised that so many people remember us, but they do! And they are all so happy to see Ry doing so well and getting so big.
I will try to post tomorrow as soon as we know how she does. We don't expect to be in our ICU room until atleast 6:00 if not later. Gilly and I are getting ready for another night on THE couch in the room. We are actually looking forward to the recliners in the ICU.
Here are a couple of pictures from this last weekend and here in Dallas.
Rylynn had a blast at her first Aggie game! She made it till almost half time!
I think she's the cutest girl on campus!

It's a rough life here at the hospital, it wears you out!

Please say an extra prayer for Rylynn, tomorrow is a big day.

With love. . .

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9.18.2009

Nevermind!!

Nevermind. We are back on for the 21st, 22nd and 23rd. The surgeon said he reviewed Rylynn’s chart and given her oxygen levels and that she is on oxygen, he wants her in here sooner than later.
Good thing I haven’t unpacked just yet, but oh the craziness!
Please pray for little Ry as she undergoes each procedure and her mom’s sanity through all of this. Check the blog this week for updates.
With love . . .
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Big News!!

I just got a call this morning from Children’s Medical Center…
Rylynn’s surgery has just been delayed by two weeks. Talk about crazy! At first I was mad, then realized there is obviously another little one who needs the surgeon more than us on that day. We are rescheduled with a similar schedule in two weeks.

Monday, October 5th: Cardiologist appointment, sedation echo and EKG, PreOp work up
Tuesday, October 6th: Cath procedure
Wednesday, October 7th: Surgery (Glenn Procedure)

Gilly and I have spent the last week packing and preparing things for us to be gone for two weeks. I guess I better begin emptying bags!! The most difficult part is that emotionally we had prepared ourselves and were ready for the week that lay ahead, now we’ve got to patiently wait two more weeks.

Here's our big girl in her new chair! She likes to be part of the action in this thing.
A new trick while changing Ry's diaper is for her to "scoot" away from you.
She thought it was quite funny that she scooted herself under this pillow!

We are still looking forward to our weekend in Aggieland and will surely have some new pics for you so check back soon!

With love. . .

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9.10.2009

Rollin', Rollin', Rollin'

Last night I put Rylynn on her tummy, hoping to get atleast five minutes of play time before she'd have her screaming fit, but she out-smarted me. . . She seriously hates tummy time so much that I guess she decided she'd rather roll over than lay there. She pushed herself over and if it weren't for her arm being a big fat speed bump she would have made it the whole way. I'm worried that with the screaming reaction she had from the crowd, she may never want to do it again. The poor kid had no idea what was going on as she lay there in a very akward and new position while everyone around her screamed. I think to say the least, she was frightened!!
We visited our Cardiologist yesterday and received a great report. Her oxygen levels, though a little low are still holding steady and have not dropped in the last 4 weeks! She received a clean bill of health and just has to stay that way for the next two weeks and surgery will proceed as planned. The nurses had fun with her at this appointment, as she gets older she wants to wiggle, talk and pull on everything. It makes each check-point a little trickier.
Rylynn is looking forward to her Aunt Caity coming in from New York this weekend and has big plans for next weekend. Before surgery, while she's feeling good Gilly wants to take Rylynn to an aTm game. So on Saturday the 19th Rylynn will put on her maroon and come to the game with me and Gilly. We are glad it's a night game so the temperature won't be miserable, but we honestly don't expect her to last too long. My mom is going to be on standby and meet us at the gate to take her back to the tailgate when she's had enough. I just hope she has a good nap that day! I can't wait to post pics of the big day so stay tuned.
I am hoping to post again before surgery and will keep updates here on the blog when we're at Children's.
With love. . .
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